A critical and often overlooked topic in metabolic disorder care—the unique needs of adults living with inborn errors of metabolism—will take center stage at the 2026 Genetic Metabolic Dietitians International (GMDI) Conference, where the National Urea Cycle Disorders Foundation (NUCDF) will be a featured presenter.
NUCDF Executive Director Tresa Warner will join Danae Bartke, BS, RD, Executive Director of HCU Network America, and Erin MacLeod, PhD, RD, LD, of Children's National Hospital for a workshop titled "They Aren't Just Oversized Children: Supporting Adult IEM Patients Through Life Stage Transitions." It will take place on Friday afternoon, April 24.
The session addresses a growing and underserved population. Thanks to advances in diagnosis and treatment, more individuals with urea cycle disorders (UCDs) and other inherited metabolic disorders are living into adulthood than ever before. Yet, the medical system has been slow to catch up. Much of the existing framework for metabolic care was built around pediatric patients, leaving adults navigating a landscape that wasn't designed with them in mind.
The presentation will examine the complex transitions adults with UCDs face, from moving out of pediatric care systems to managing independence, employment, long-term nutrition needs, and finding knowledgeable providers. The core message is clear: adults with metabolic disorders have evolving, lifelong needs that demand tailored support, not simply a scaled-up version of childhood care.
The GMDI Conference, held every two years, brings together dietitians and healthcare professionals from around the world to advance best practices in metabolic nutrition and care, making it an ideal venue for this conversation.
NUCDF will also be on-site throughout the conference with a booth, where staff will connect with healthcare professionals and share resources. Visit GMDI to see the full conference agenda.
